“Difficult Decisions” is an ethical decision-making tool and guidance for care workers. Available at www.careworkerethics.org in English, French, Spanish and Russian, it is accompanied by orientation slides and a handy pocket guide.
Many children affected by AIDS have parents who are members of marginalized groups such as sex workers, transgender people, people who use drugs, and men who have sex with men. In many cases, the stigma surrounding their parents prevents the children from receiving the services they need because their families fear facing discrimination and/or legal repercussions in clinical or social services settings.
In order to address this barrier to family-centred services, the Coalition for Children Affected by AIDS has co-led an international working group, which has launched a new tool and guidance to assist care workers in managing ethical dilemmas when providing services to children and families of the most stigmatized and marginalized populations.
Care workers face ethical dilemmas when their values, responsibilities or concerns seem to conflict. For example:
- A care worker wants to protect a child, but is worried doing so might have negative consequences for his parent;
- A care worker wants to be honest, but is worried that the truth may cause harm;
- The child’s caregivers are members of populations whose behaviours are criminalized, and the care worker is torn between upholding the law, and protecting the household members from an unjust criminal system.
Without basic support and guidelines on how to manage such complex situations, care workers may act in ways that increase marginalization or stigma and discrimination toward these populations, even to the extent of disrupting households and families.
The new tool and guidance, available in English, French, Spanish & Russian, supports care workers to make good decisions, in partnership with families, to increase protection for women and children, and to reduce discriminatory behaviour.
The working group convened in 2011 and launched the tool at AIDS 2014 in Melbourne, Australia, after a four year process of reviewing, pilot testing (in five regions) and validation. An independent evaluation is taking place in Kenya, Lebanon and Australia.
Partners in this initiative include:
- The Coalition for Children Affected by AIDS – co-lead
- The Egmont Trust
- The Global Forum on MSM & HIV (MSMGF)
- Global Network of People Living with HIV/AIDS (GNP+) – co-lead
- Global Network of Sex Work Projects (NSWP)
- Harm Reduction International
- International Council of AIDS Service Organizations (ICASO)
- International HIV/AIDS Alliance
- International Network of People who Use Drugs (INPUD)
- Toronto Community Care Access Centre
- University of Oxford’s The Ethox Centre
- University of Toronto Joint Centre for Bioethics
In addition, UNICEF and UNAIDS provided technical expertise to support the project.